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Neurofibromatosis prognosis

What is the prognosis if you have Neurofibromatosis? Quality of life, limitations and expectatios of someone with Neurofibromatosis.

Neurofibromatosis prognosis

Neurofibromatosis is a genetic disorder that affects the growth and development of nerve cells in the body. It is characterized by the formation of tumors on nerves, skin, and other parts of the body. There are three types of neurofibromatosis: NF1, NF2, and schwannomatosis. Each type has its own unique symptoms and prognosis.



Neurofibromatosis type 1 (NF1) is the most common form, affecting about 1 in 3,000 individuals worldwide. It typically appears in childhood and is characterized by the development of multiple benign tumors called neurofibromas. These tumors can grow on or under the skin, as well as on nerves throughout the body. NF1 can also cause other complications such as learning disabilities, bone deformities, and vision problems. While the severity of symptoms can vary widely, most individuals with NF1 have a normal lifespan.



Neurofibromatosis type 2 (NF2) is less common, affecting about 1 in 25,000 individuals. It is characterized by the development of tumors on the nerves responsible for hearing and balance. The most common symptom is gradual hearing loss, which typically begins in the teenage years or early adulthood. NF2 can also cause other neurological problems such as balance difficulties, facial weakness, and vision problems. The prognosis for NF2 varies depending on the individual, but it generally involves a higher risk of developing severe hearing loss and other complications.



Schwannomatosis is the rarest form of neurofibromatosis, and its exact prevalence is unknown. It is characterized by the development of schwannomas, which are tumors that grow on the covering of nerves. The main symptom is chronic pain, which can be severe and debilitating. Schwannomatosis typically appears in adulthood and does not usually affect lifespan. However, the prognosis can vary depending on the location and size of the tumors, as well as the individual's response to treatment.



It is important to note that neurofibromatosis is a complex disorder, and the prognosis can vary greatly from person to person. Regular medical check-ups, early detection, and appropriate management can help individuals with neurofibromatosis lead fulfilling lives and minimize the impact of the condition on their overall well-being.


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Stories of Neurofibromatosis

NEUROFIBROMATOSIS STORIES
Neurofibromatosis stories
Shortly after birth in 1968 Michael was diagnosed with Neurofibromatosis 1 and has undergone 20 plus surgeries. For years Michael had high blood pressure spikes, profuse sweating episodes, pain, panic attacks and more that landed him in the ER and D...
Neurofibromatosis stories
Over the years I have had a few people ask me why I haven't given up.  This really bugs me because there are other people who don't think it is fair that persons with disabilities (or major health problems) get 'special' accommodations, or they thin...
Neurofibromatosis stories
In March 2012 my hearing got bad suddenly in th left ear.  Subsequent tests showed a meningioma as well as a vestibular schwannoma, a classic diagnosis for NF2.  Both tumours were succesfully removed leaving me with facial palsy and balance issues....
Neurofibromatosis stories
I was told at a young age I had NF, nothing more.  As I got older around 18, lumps started to appear on my body.  I went to my doctor he told me he thinks they were NF lumps, he checked to see if I had large brown spots he counted 6 and said they ...
Neurofibromatosis stories
The first time I can remember being diagnosed was at age 10.  I have several small tumors all over, cafe Au Lait spots and a couple of larger tumors. In 2010, I had a GIST tumor removed which according to my surgeon is very common with people with N...

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Neurofibromatosis forum
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